Hi all. Wondering if anyone has had a colostomy due to complications from EDS which is a connective tissue disease. Doctors now believe my bowel perforated due to EDS - rather than divertic. This will likely mean my situation is much worse as another perforation could occur at any time. also need medical expertise so if there is a doctor out there who is familiar with my disease, it would be great. I live in Canada.
Daisy Mae
Oct 25, 2012 3:23 am
Bill
Oct 26, 2012 5:39 am
Hello Daisy Mae. Thank you for your post. I had never heard of this condition before. However, I Googled it and came up with a very informative website: http://www.ehlers-danlos.org/index.php/ehlers-danlos-syndrome-mainmenu-17 . I feel sure that such an organisation would have contacts who specialise in this around the world. It might be worth a try to contact them.
Best wishes. Bill
Best wishes. Bill
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Daisy Mae
Nov 11, 2012 4:38 am
Tnx Bill for replying . Yes, I am aware of that org, and others. Very good info but no one on these networks is candid about having had a colostomy. Am still hoping someone with EDS on this blog will find me. I remain hopeful. Tnx again for looking up that up - it means one more person knows about EDS - a disease that is more common than most people realize.
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